atezolizumab (Mpdl3280a)& avastin phase 1 trial update

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ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby ieowi » Thu Oct 01, 2015 7:55 pm

Good news! please keep us updated. I hope the tumors hold or even shrink with time.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby midlifemom » Fri Oct 02, 2015 5:14 am

StephenWinsToday wrote:
I suppose I also never understood why people would give up "proven" therapies in favor of something experimental.


Stephen, you hit it on the head for me with this. If existing therapy is keeping me stable, with tolerable side effects, why try the unknown?

Butt thanks for keeping us all informed. Glad you're doing well.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby jortego128 » Fri Oct 02, 2015 12:20 pm

Great news!! Time to update that sig!
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Thu Oct 29, 2015 5:59 pm

I had my 8th infusion today. As usual...it was pretty uneventful. But there have been some side effects I wanted to report.

I've been having really bad intestinal pains for the last few weeks. It actually started before my last scan...and when my scan didn't show any progression, I figured I wouldn't worry about it. The pain died down for a few weeks but it's back now. A twisting, burning, 'kicked in the stomach' pain happens every day/night. It's not terrible...and I can function through the pain...but it's still annoying. They are saying it is most likely GERDS (gastroesophageal reflux disease) and we will keep an eye on it. They recommended Prilosec or tums. Hm. Easy fix, I hope!

My blood work was awesome. My hemoglobin was above average...yet another thing to watch. I was anemic for so long after so many blood transfusions...it took a lot of iron pills to climb back up. But I stopped the pills over a month ago and they are shocked that my body has rebounded like it has. I guess raising your iron takes a long time...and it didn't for me...and now I have extra hemoglobin. Lol. I'll take that, I guess. Science.

So overall...things are going well. I'm at a point in my life where I feel like I can get back to some sort of normal life. I have a job interview tomorrow. All I've wanted since I had to leave work was go back. And now I just might be able to.

If I can offer any advice at this point it would be to not wait until the last minute to start looking at trials. If this trial stops working for me, I still have many FDA approved, standard of care drugs waiting for me. But for now, this drug has been my own personal savior. Even if you don't want to do a trial NOW, keep a folder with trials that interest you or might give you the most benefit.

Lastly, I have a scan on the 13th. You'll hear from me then!

Edit: oh yeah, as I always do, I asked how others on the trial are doing. A doctor on my team said the ones who responded are doing as well as I am. And they haven't had anyone have to leave the trial yet due to progression. Someone hit their 2 year mark on this drug.
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby ieowi » Thu Oct 29, 2015 6:13 pm

thank you for sharing stephen, very happy your trial is going well, i think this is what we all wanted something to hold the cancer if you can do that this is very good. :D
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Thu Nov 12, 2015 9:44 pm

Scan day was today! Still stable! That's five months now!

Literally, nothing has changed at all. My QoL is outstanding...I've even gone back to work!

I DO have abdominal pain every day still. Not sure if it's GERDs, but it's definitely not cancer...so that's great! It also might be the avastin...I've heard it can cause intestinal pain. But geez, as long as it's not cancer...I'll take a little pain!
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby ieowi » Thu Nov 12, 2015 11:17 pm

StephenWinsToday wrote:Scan day was today! Still stable! That's five months now!

Literally, nothing has changed at all. My QoL is outstanding...I've even gone back to work!

I DO have abdominal pain every day still. Not sure if it's GERDs, but it's definitely not cancer...so that's great! It also might be the avastin...I've heard it can cause intestinal pain. But geez, as long as it's not cancer...I'll take a little pain!

Great news Stephen how is the side affect ?
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

Nik Colon

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Nik Colon » Fri Nov 13, 2015 12:19 am

StephenWinsToday wrote:Scan day was today! Still stable! That's five months now!

Literally, nothing has changed at all. My QoL is outstanding...I've even gone back to work!

I DO have abdominal pain every day still. Not sure if it's GERDs, but it's definitely not cancer...so that's great! It also might be the avastin...I've heard it can cause intestinal pain. But geez, as long as it's not cancer...I'll take a little pain!

That's awesome!

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Fri Nov 13, 2015 11:52 am

ieowi wrote:Great news Stephen how is the side affect ?


The abdominal pain is fine. It happens mostly when I'm hungry and dissipates when I eat...so I'm figuring out a good snack schedule. Tums also help, so I have those handy. Other than that...no other side effects to report!
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

User avatar
Crystald
Posts: 142
Joined: Thu Feb 26, 2015 1:50 pm

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Crystald » Fri Nov 13, 2015 1:42 pm

Image

Most excellent! Especially going back to work!



Prayers for continued stability.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby ieowi » Fri Nov 13, 2015 5:46 pm

StephenWinsToday wrote:
ieowi wrote:Great news Stephen how is the side affect ?


The abdominal pain is fine. It happens mostly when I'm hungry and dissipates when I eat...so I'm figuring out a good snack schedule. Tums also help, so I have those handy. Other than that...no other side effects to report!

Good to hear that, I really hope they find a cure of this soon.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

StephenWinsToday
Posts: 39
Joined: Mon Jun 22, 2015 12:08 pm
Facebook Username: Stephen Savage-Estrada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby StephenWinsToday » Tue Dec 29, 2015 6:15 pm

I haven't updated in a while, so I thought I would tell you all what's been happening:

Not much of anything, actually. Lol. I've been fighting with the same abdominal pain I posted about a while ago. My onc finally sent me in for an endoscopy yesterday which revealed....ulcers! Yay! Two!! I sort of knew this might be the case. So my Prilosec has been upped to two a day for now...I guess to reduce acid and aid in healing. It's comforting to know that I'm not dealing with peri mets or any spread. Never have I been so thankful for ulcers! With that said..they aren't very fun.

I go in for infusion 11 of roughly 16 this Thursday. I start the morning off with an early ct scan, followed by labs, onc visit, the chair. For once I feel at peace with the upcoming scan. I haven't felt this well in such a long time...I just figure things must still be going pretty good underneath my hood. I'm working full time, eating well, exercising, traveling...it's such a blessing (and medical miracle, if I do say so myself). I can't believe that this time last year I was 110 lbs and sickly. I looked like I had just escaped a death camp. And now, here I am. Back to life and staring down the big 3-0 in April.

We, my onc and I, are starting to have the "after trial" conversation. As of now we aren't sure if I'll continue on the pdl1 inhibitor as I am now, or come in for a booster every now and then, or just get off the meds completely. He assures me that my immune system has the cancer in its memory at this point..but the thought of being stage 4 and doing NOTHING is really terrifying. perhaps if I were NED, I wouldn't mind stopping as much. But my tumor is still there...we just aren't sure if it's alive or not. Oh well, all in all, I'm in a good spot right now.

But swing some chickens for my Thursday scan, would ya mind?
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby Steph20021 » Tue Dec 29, 2015 6:31 pm

Awesome news, minus the ulcers! Thanks for the update. If i was lynch+ like you id want to be following your lead buddy. So happy for you. Goodluck Thursday!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby NateA » Tue Dec 29, 2015 6:43 pm

Swinging the whole coop of chickens for ya!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: atezolizumab (Mpdl3280a)& avastin phase 1 trial update

Postby jortego128 » Tue Dec 29, 2015 7:11 pm

Will pray for you tonight!
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016


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